I’ve had so many people reach out and ask how Colton is doing/what happened. It’s hard to be clear through social media, because the problem was so complex and takes a while to explain. I hope that this post clears up some of the questions/confusion and can also serve as a history for our own family!
During the month of December 2017, Colton was feeling a lot of sensory symptoms throughout his whole body. This isn’t unusually abnormal, however, most of the time Colton spends symptom-less. When he does feel symptoms, it’s because he’s eating something contrary to what he should, overdid it on exercise, or is feeling an immense amount of stress. Since December is a stressful month for most everyone (millions of holiday parties, less sleep, finals week/end of the semester, Christmas financial responsibilities, etc.), so we didn’t think too much of it.
December/January have always been scary to us, since these are the months when Colton experiences the majority of his symptoms for the year/had a relapse two years ago in January. The most important thing when looking for signs of a relapse are NEW symptoms. At this point, nothing was new.
On Christmas morning, he woke up with a numb knee (a symptom that he hadn’t felt before). As the day went on, the numbness started spreading. Of course we called his doctor, and they said that they would have the doctor on call contact us with instructions for what to do.
Two days later, the numbness had spread to Colton’s upper chest and continued down to his toes. We still hadn’t heard back from a doctor. He was extremely fatigued and frustrated. He could barely walk to the bathroom (about a 4 foot walk from our bed) without feeling exhausted. I remember him standing to brush his teeth and having to sit down halfway through because he didn’t have the strength to do it standing up. For me, seeing Colton like this is extremely hard. We have always pushed each other to do physical things that we never thought possible. It was his idea for me to start running marathons. I encouraged him to sign up for his first triathlon. We hike nearly every weekend. He normally takes the stairs two at a time up to our apartment (we live three floors up). He easily spends an hour at the gym every day and craves any type of outdoor activity. We had just spent two weeks in October walking our way through Norway, Denmark, and Boston. To be unable to stand at the sink for two minutes to brush his teeth speaks to the invasive and destructive nature of this disease.
We continued to call the doctor’s office (you can’t go to the ER for something MS related, unless you believe the symptoms to be life-threatening) with little to no response from anyone. Finally, on the 28th, we were able to get an appointment to get two steroid infusions over two days. These infusions (Solumedrol) stop the inflammation that is damaging the myelin causing the symptoms. They are time-consuming (two hours per infusion). They leave Colton with many symptoms, such as extreme back pain, exhaustion, and a metallic taste in his mouth (along with the experience of his MS symptoms). It takes a few days for the steroid to wear off, and he usually starts feeling better.
This time, it didn’t help at all. His symptoms continued, even worsened.
On January 9th, we went in for an MRI of Colton’s brain, c spine, and spine (which should have happened the two weeks prior, but everyone was trying to meet their deductibles before the end of the year), which unveiled three new lesions (two on his spinal cord, one on his brain). When the doctor told us the news, my stomach dropped. He hadn’t had any new lesions for three years, almost from the time that he was diagnosed. We had worked so hard to change our lives to fight this disease, including cutting sugar, gluten, dairy, and trans fats from out diet, focusing on exercise, learning how to manage stress, and learning to say “no” more often. Since we had made those changes, Colton’s health had significantly improved. In fact, at our last yearly MRI, the neurologist told Colton that, because they had seen no progression of the disease in almost two years, he didn’t need to come back for an MRI in January; he could wait until summer 2018. To hear that he had not just one but THREE new lesions was NOT what we wanted to hear.
The neurologist let us know that the reason for this relapse and progression was the failure of Tecfidera, the twice-daily pill that Colton had been taking since being diagnosed in spring of 2014. Since it was only 50% effective in the first place, she wasn’t surprised. This happens. We were presented with three new medications and asked to choose between them. She encouraged us to be as aggressive as possible, since Colton is young and otherwise healthy.
An important detail: when Colton was diagnosed with MS, they did a blood test to check for something called the JC Virus. It’s a common germ that more than half of all adults have been exposed to. It isn’t too much of a problem for most people, but if someone who has been exposed to it takes certain medications, the virus can develop into a brain infection called PML. 50% of people who develop PML die within the first few months of developing the infection. It can also cause blindness, dementia, paralysis and seizures. Colton has been exposed to the JC Virus. When he was diagnosed, he was told to stay away from any medication that could cause PML, which is why he chose Tecfidera. Now, the neurologist was presenting three different medications, all of which run the risk of developing PML.
I swear, we talked to the doctor for hours (in and out of the office) about what we were going to do. I have never, ever felt so connected to a doctor in my entire life. She is heaven-sent to us. She has spent countless hours on the phone with us, answering every question, listening to our concerns, and giving us the confidence to pick the best option, all without charging us a dime. Although being able to talk to family about MS is a nice release, talking to our doctor is so satisfying because she knows and treats hundreds of people with MS. Throughout the time that we were making this decision, I felt most strongly that we should trust her judgment and recommendations, and that if we did that, we would be ok. Still, it was an agonizing decision.
The rest of that week was spent getting three more steroid infusions, because two was not enough. We also decided to move forward with Tysabri, a medication that is 70% effective and highly recommended among MS patients. The chance of developing PML in the first year is 2/10,000. Our plan is to be on this drug for a year and move on to another drug that is a bit more aggressive (we couldn’t choose that one right now for insurance reasons). After a year, the risk doubles.
We were so worried about our choice. But after weeks of prayer, fasting, and temple trips, we felt most calm about Tysabri. We can’t predict the future, and not knowing if this medication will cause PML is still scary to us, especially considering all of the things that we have coming in the near future (baby #1, Colton’s graduation, buying a house, etc.).
I remember when Colton told me about his diagnosis through an email when I was on my mission. I had no idea what to think. I knew nothing about MS, and I couldn’t study about it. It was my sole responsibility to preach the gospel, listen to the Spirit, and be obedient to the commandments and mission rules. That night, I prayed and asked God to bless Colton with comfort and strength. I asked Him to bless Colton with a healthy body and mind. I felt immediately comforted and knew that Colton would be ok. I’ve hung on to that feeling for years, and still feel it on an almost daily basis. I had no idea that we would get married one day and that this would be part of our daily life. MS has taught us to be faithful and hope for a greater future through the hard times. It’s brought us very close together and taught us to cherish every healthy day. It’s taught us to be grateful for the miracle that are our bodies, given to us by a loving Father in Heaven. There are so many more positive and miraculous things that our bodies do on a daily basis than we could ever imagine.
Colton’s body has been healing slowly each day. It can take months to recover from a relapse, especially a severe one. His first infusion of Tysabri was Valentine’s Day. He has another in March. And hopefully one more before the baby comes. He should be feeling really good by then.
To say that it’s been a stressful couple of months is quite the understatement. We’re grateful for friends and family who have reached out to us and asked what they can do to help. When something like this is happening, the best thing that anyone can do for us is seek to understand the situation and express love and concern!
We are grateful to have wonderful health insurance through my work (one of the reasons that working for the government is the BOMB) and an income that helps us pay the bills. I’m grateful that through this whole experience, my pregnancy has been incredibly mild. I’ve had little to no symptoms since the first trimester, except maybe a little bit of exhaustion/nausea at times. We are grateful to have this awful chapter behind us and are ready to open a new one with a beautiful little baby boy! Most importantly, I’m grateful for Colton’s strength. In my eyes, he is perfect. I would never wish this disease on him for even a second. I would do anything in my power to take it away from him. His strength is inspiring to me. He loves his life and works incredibly hard to better himself each day. I truly don’t understand why he fell in love with me, let alone chose to marry such an imperfect person! But I thank God for our marriage and Colton’s example every single day.